E-25 swallowing and dysphagia
The holistic management of people with difficulty swallowing (i.e. dysphagia) challenges clinicians. The drive to eat and drink is strong; eating and drinking are vital social activities and a great source of pleasure; life itself depends on adequate nutrition and hydration, and there is little firm, helpful evidence to make clinical decisions. This competency highlights the requirement to develop the professional second generic capability, being “able to identify the relevant legal, ethical, and cultural frameworks that appertain to a patient’s situation, to consider them when making decisions, and to adapt plans in the light of these factors.” Additionally, one needs wisdom.
Dysphagia is common, particularly but not only in people with neurological disorders. Skills in risk management, shared decision-making, and advanced care planning are all essential when managing people who cannot swallow safely. The team will need access to specialist advice on nutrition, altering food consistency, and risks of invasive procedures such as gastrostomy and total parenteral nutrition. Successful competency in this area of clinical practice will contribute to the evidence needed for the fifth rehabilitation capability, “Able to recognise, accept, explain and manage the uncertainty present in all aspects of rehabilitation, helping all people involved to understand and work with the patient despite the uncertainty.”
Table of Contents
The rehabilitation expert is “Able to assess swallowing to identify problems, coordinate interventions, give general advice, and manage pro-actively possible decisions concerning assisted nutrition and hydration.” Further information on indicative behaviours, knowledge and skills supporting this competency and some references are available in a downloadable document.
Introduction - swallowing and dysphagia
Eating and swallowing satisfy two of Maslow’s three basic needs: hunger and thirst (the third is sexual release). Equally significantly, feeding in the company of other people contributes considerably to the third area of need, forming close personal relationships. Next, many people enjoy the taste and texture of food and drink; the enjoyment of food and drink is, for many people, a significant source of pleasure. Consequently, a disturbance of swallowing, termed dysphagia, can be very disruptive and markedly reduce the person’s quality of life.
Additionally, the neurophysiological structures and processes that enable safe eating and drinking are also inextricably related to speech and voice, so people with impaired swallowing often have impaired speaking. This will inevitably also affect their quality of life.
Thus, managing people with swallowing difficulties is an essential rehabilitation competency. The specific details are usually the province of speech and language therapists because they are already experts in the functioning of the oropharynx in the production of voice and speech. Dieticians are also typically involved. However, all other team members must know about dysphagia because, for many patients, they will make a significant contribution to the overall management.
Traditionally, impaired swallowing was attributed to brain-stem neurological dysfunction. However, in 1987, Caroline Gordon, Richard Langton-Hewer, and I found that 37 of 41 patients with dysphagia after an acute stroke had a cerebral hemispheric stroke; brain-stem damage was rare. This is now generally accepted. Indeed, it is evident that a significant proportion of people in care homes have swallowing difficulties, but few have brain-stem disease. Many neurological conditions are associated with dysphagia.
Unsurprisingly, swallowing difficulties occur in people with head and neck cancers and cancer of the oesophagus. It can occur in muscle diseases such as myasthenia gravis. Swallowing difficulties become more common as people age, and in care homes, up to two-thirds of residents may have impaired swallowing. In older people, there is a wide range of causes.
Most screening tests for dysphagia are based on observation of swallow. A simple test for use by any profession is the Gugging Swallow Screen. A systematic review in 2018 found firm evidence of its reliability and sensitivity. It tests the swallow of saliva, semisolid (thickened water), liquid water, and solids, which gives it good face validity. There are other simple tests, such as swallowing 25 ml of water.
More detailed assessments are available but should be restricted to complex cases; they will not usually aid management.
The downloadable document lists many reviews of the evidence concerning treatments for swallowing. I will not review them in detail. Instead, I give a brief overview of managing people with swallowing difficulties. It falls into at least four parts.
First, increase the ease and safety of swallowing by altering the type of food or fluid eaten or drunk. For example, one may thicken fluids to be more easily controlled in the mouth and throat. Other examples include avoiding dry or crumbly food, avoiding solid chunks of meat and other food, and taking a puree diet.
Second, practice swallowing, and if appropriate, practice techniques to increase safety, such as reducing the rate of eating and the amount of food taken at one time. As with all other skills, practising within safety limits will improve the function. Conversely, avoiding eating will risk losing preserved ability.
Third, optimise the context. This generally means reducing noise and distractions to allow more concentration on chewing and swallowing, ensuring the person is well-positioned, usually sitting upright, and has appropriate adaptations or equipment.
It also means minimising the adverse effects of other interventions, especially drugs. Most people with neurological conditions and swallowing problems will take medications that disrupt swallowing. The medicines may dry the mouth, reduce concentration and attention, or impair complex neuromuscular coordination.
Fourth, consider the nutritional aspects of feeding and swallowing, ensuring the diet satisfies the person’s dietary needs.
This overview of ways to improve the person’s swallowing demonstrates that management is a team endeavour, and almost every professional has a vital potential role. It is entirely inappropriate to consider the speech and language therapist is responsible for all aspects.
Swallowing - broader considerations.
Managing the swallowing difficulty has suggested one should take close control over the context. At the same time, I have highlighted the essential social aspects of feeding, eating, and swallowing. This must always be considered, and contextual constraints often need some relaxation. When a person is at home, the family members can be educated to moderate their behaviours to allow safe eating while maintaining most of the social benefit of sharing a meal. This is much more challenging in a residential setting.
Some patients rate their enjoyment of eating or social interactions so highly that they ignore or reject suggested policies. The role of the professionals is to ensure the person is given realistic and not alarmist information about the risks and to suggest ways to lessen the danger as far as possible. A planned review after a few weeks to re-evaluate the risk is worthwhile; the patient or the clinical team may need to adjust their approach.
When a person cannot decide, it is more complicated. Some people have sufficient mobility and arm function to eat as they please; one cannot stop their risky behaviour and must manage it as well as possible. If the care staff have complete control over the person’s access to food and fluids, one must hold a best interests meeting to balance their wishes against the risk. For many people, eating and drinking are one of their few remaining pleasures, and these people should usually be fed at risk, holding a planned review of the observed risks sometime later.
However, when discussing feeding at risk, one must always consider the impact on care staff or family members who assist and witness the consequences, such as choking and dying. This may limit the risks allowed.
Some people choose not to eat or drink, knowing that this will lead to death. Voluntary stopping of eating and drinking has been studied, and articles and reviews are available. For example, Nataša Ivanović and colleagues reviewed the literature of 16 articles, suggesting that more research was needed. Mohamed Rady and Joseph Verheijde discussed the ethical aspect of giving continuous deep sedation during the process.
In the rehabilitation context, two essential issues should be considered.
Many patients have progressive disorders where dysphagia is a possible problem in the future, one that might prevent feeding and drinking. In these people, the rehabilitation team must discuss the possibility early while the person still has capacity. This is Advance Care Planning. There should be a clear record of the person’s wishes. This may extend to an Advance Decision to refuse treatment. One should also discuss setting up a Lasting Power of Attorney and writing an Advance Statement of Care Wishes. Guidance is available from many sites, such as Compassion in Dying.
Sometimes, the need to intervene in someone lacking capacity may arise acutely. Before a nasogastric or gastrostomy tube is inserted, the clinical team should consider whether it is in the person’s best interests. In the acute phase, for example, after trauma, the uncertainty about prognosis may be too great to decide not to act. Under these circumstances, one should undertake a treatment trial for an agreed period and agree on a time for review and that one option is not to continue feeding.
Last, one should remember that long-term gastrostomy feeding of people lacking the capacity to agree must be reviewed regularly, at least annually. The National Guidance, ‘Clinically assisted nutrition and hydration (CANH) and adults who lack the capacity to consent. Guidance for decision-making in England and Wales.’ says, “Decisions should be reviewed every 6 months (or every 12 months where the patient has been in a stable condition over a long period of time). They should be reviewed more often if the clinical situation has changed significantly (e.g. if there are signs that the patient is not tolerating the intervention, or if a feeding tube needs replacing); or if information comes to light that might affect the original decision.”
Understanding and alleviating the causes and consequences of difficulties patients may have with eating and drinking when swallowing is impaired requires more than knowledge of the neurophysiological control of oromotor and pharyngeal function. A person-centred approach requires the rehabilitation expert to understand the significance of eating and drinking to the person. Successful management depends on knowing various potential risks and actions and negotiating a plan with the patient that balances any risks against the person’s wishes to enjoy meals. In addition, the spectre of death from choking, dehydration, or malnutrition must be considered; the person’s judgment on taking risks to allow enjoyment and pleasure should be respected, provided carers’ feelings are also considered.